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Autism Series 2013 – Part 3: The Autism “Epidemic”

It seems that autism is on the rise. Once hidden away in institutions or just dismissed as odd, society is now faced with a condition that it is yet to come to grips with. Some out in the community believe that it must be a toxin, or vaccines or mercury. Others accuse doctors of simply giving in to the unreasonable demands of pushy parents to defraud the system of money – “Things have reached the point these days where any kid that’s not a charming little extrovert will be accused of being, ‘on the spectrum.’”[1]

So is there an epidemic of kids who are “not charming little extroverts”? It depends on who you ask.

Take, for example, two articles written in the year 2000. In the first, titled “The autism epidemic, vaccinations, and mercury”, Rimland said,

“While there are a few Flat-Earthers who insist that there is no real epidemic of autism, only an increased awareness, it is obvious to everyone else that the number of young children with autism spectrum disorders (ASD) has risen, and continues to rise, dramatically.”[2]

The other, written by Professor Tony Attwood, a world authority on Aspergers Syndrome, said,

“… is there an epidemic of people being diagnosed as having Asperger’s Syndrome? At present we cannot answer the question, as we are unsure of the diagnostic criteria, the upper and lower levels of expression and the borders with other conditions. Nevertheless, we are experiencing a huge increase in diagnosis but this may be the backlog of cases that have been waiting so long for an explanation.”[3]

I don’t think it’s very often Prof Attwood is lumped with ‘flat-earthers’. But you can see the change in perspective from one side looking objectively to the other who need for there to be an “epidemic” of autism in order to strengthen their case.

So who’s right? To see if this autism “epidemic” hypothesis has any real merit, we need to delve into some numbers.

First, some basic epidemiology – because part of the confusion in looking at the autism numbers is defining exactly what those numbers represent. Here are some important epidemiology terms from the “Physicians Assistant Exam for Dummies”[4]:

Incidence: For any health-related condition or illness, incidence refers to the number of people who’ve newly acquired this condition.

Prevalence: Prevalence concerns the number of people who have this condition over a defined time interval.

Most autism figures are for prevalence, or often more specifically, point prevalence – “the number of people who have this condition at any given point in time.”

The other thing to remember from my last blog is that initially autism was only diagnosed on the strict rules of Kanner, and was considered to be a single disease caused mainly by bad parenting [5]. So through the 1960’s and 1970’s, only the most severe children were diagnosed as having autism because the high-functioning autism would not have met Kanners criteria, and even if they did, most parents didn’t want the label for fear of the social stigma.

So then, what are the numbers? The early prevalence was estimated to be less than 5/10,000 or 1 in 2000[6], although in surveys done after 1987, the numbers began to rise past 7/10,000[7]. In the 1990’s, Autism prevalence climbed into the teens and the latest prevalence has been documented for autism is 20.6/10,000[7].

But that’s only about 1 in 485. The CDC estimated a prevalence of 1 in 88 (113/10,000)[8]. Where did the other 400 people go?

This is where the importance of definitions is highlighted. Autism is considered part of a spectrum, and at the time of the surveys reviewed by Fombonne, DSM III then DSM IV considered conditions like Pervasive Developmental Disorder and then Aspergers Disorder to be part of that spectrum. Adding in the rate of PDD and you have a figure of 57.7/10,000 and adding in Aspergers gives you a combined rate of 63.7/10,000, or 1 in 157 people surveyed[7].

And yet even then, who you measure and how you measure makes much more of a difference, because a recent, rigorous study targeting all 7 to 12 year old children in a large South Korean populous found a prevalence of 2.64%, which is 264/10,000 or 1 child in every 38. The authors noted that, “Two-thirds of ASD cases in the overall sample were in the mainstream school population, undiagnosed and untreated. These findings suggest that rigorous screening and comprehensive population coverage are necessary to produce more accurate ASD prevalence estimates and underscore the need for better detection, assessment, and services.”[9]

So if there has been a fifty-fold change in prevalence (from 5 to 264 cases per 10,000 people) in just thirty years, isn’t that an epidemic?

Well, no. As much as some might ignorantly deny it, there is no real evidence for it. Remember the definitions from the “Physicians Assistant Exam for Dummies”[4]:

Incidence: For any health-related condition or illness, incidence refers to the number of people who’ve newly acquired this condition.

Prevalence: Prevalence concerns the number of people who have this condition over a defined time interval.

It’s the rapid rise in the number of new cases diagnosed that defines an epidemic, which is the incidence and not the prevalence[10]. While the prevalence has changed a lot, the incidence has been fairly stable. From Nature, “Christopher Gillberg, who studies child and adolescent psychiatry at the University of Gothenburg in Sweden, has been finding much the same thing since he first started counting cases of autism in the 1970s. He found a prevalence of autism of 0.7% among seven-year-old Swedish children in 1983 and 1% in 1999. ‘I’ve always felt that this hype about it being an epidemic is better explanation’, he said.”[11]

Fombonne agrees. “As it stands now, the recent upward trend in estimates of prevalence cannot be directly attributed to an increase in the incidence of the disorder.”[7] He said later in the article that a true increase in the incidence could not be ruled out, but that the current epidemiological data which specifically studied the incidence of autism over time was not strong enough to draw conclusions.

While there’s no epidemic, there is the real issue of the genuinely increasing prevalence. Why the rise in those numbers? Fombonne went on to explain, “There is good evidence that changes in diagnostic criteria, diagnostic substitution, changes in the policies for special education, and the increasing availability of services are responsible for the higher prevalence figures.”[7] Nature published a graph from the work of Professor Peter Bearman, showing that 54% of the rise in the prevalence of autism could be explained by the refining of the diagnosis, greater awareness, an increase in the parental age, and clustering of cases in certain geographic areas.

From Nature: “The fact that he still cannot explain 46% of the increase in autism doesn’t mean that this ‘extra’ must be caused by new environmental pollutants, Bearman says. He just hasn’t come up with a solid explanation yet. ‘There are lots of things that could be driving that in addition to the things we’ve identified,’ he says.”[11]

There is no autism epidemic, just medical science and our population realising just how common autism is as the definition becomes more refined, people become more aware, and some other biosocial factors come into play.

What can we take from the numbers? That we’re being overtaken by Sheldon clones? That soon there will be no more “charming little extroverts”? If the CDC figure is accurate, then one person in every hundred is on the spectrum, so the world is hardly being overtaken by autism. But the take home message is that Autism Spectrum Disorders are more common that we ever thought, and there are more people on the spectrum “hiding in plain sight”. If the study from South Korea is accurate then one person in every thirty-eight is on the spectrum, but two thirds of them are undiagnosed.

Should there be more funding, more resources, or more political representation for people on the spectrum? Perhaps, although the public and research funds are not unlimited, and other health concerns should also be treated fairly. But since autism is life long and impacts on so many areas of mental health and education, understanding autism and managing it early could save governments billions of dollars into the future.

Rather, I think that the climbing prevalence of ASD is a clarion call for understanding and tolerance. If we learn to tolerate differences and practice discretionary inclusion, then both the autistic and the neuro-typical can benefit from the other. That’s a world which we’d all like to live.

4 thoughts on “Autism Series 2013 – Part 3: The Autism “Epidemic””

There is a lot of information here. But one strong contributing factor that seems to have been over looked for ASD being “hidden in plain sight” is that social structures have changed, as have gender roles, and parenting techniques – all are more relational, fluid and less geared to male dominated relationships, including excuses for behaviour. Basically ASD is more noticeable, and when there is even a basic set of characteristics/ behaviours that can be labelled more people will be labelled. There are issues associated with Autism and HFA/ Aspergers being linked, as HFA & Aspies are probably the least likely to be diagnosed correctly. It reminds me of the “Forest Gump” scene where at “75” he is retarded, and at “80” he’s normal enough for mainstream schooling. ASD is a bit like that… move the line one way…move it back the other… I’m enjoying your blogs 🙂

Hi Lyn, thanks for the encouragement! I think there’s much truth to your observation that ASD is becoming more noticeable because of the change in social structures. I also agree with you that Aspergers is often poorly diagnosed, and that we as a society have a pre-occupation with labelling everything. It’s a two-edged sword, I think. On the one hand, some people can be incorrectly branded when they are a just a stronger variation of normal. On the other hand, some people aren’t correctly labelled, and miss out on valuable resources that could be of benefit to them. Personally, I spent years trying to overcome what I thought were personal weaknesses. The Aspie diagnosis explained so much about why I was the way I was. It has helped me to accept my peculiar traits, and work with them instead of fighting against them. So I’m happy with my label 🙂

The defining boundaries of ASD are still moving around because the neurobiology of ASD is still being delineated. I think once that’s more settled and a formal scan or pathology test is developed, the diagnosis will become biological, rather than psychological, which will limit the shifting that we have seen in the last few decades. More on that in a future post 🙂

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